In a lot of ways, Hawaii-native AJ Biacan is like most 3-year-old boys. He loves parks, trains and going to the zoo. Yet, for most of his young life, AJ has required special attention.

AJ was born with Pierre-Robin Syndrome, a condition that affects facial structure, lower jaw size and breathing ability. As a result, he’s lived with a tracheostomy that kept him from speaking, breathing and eating normally, and—much to his chagrin—swimming in the ocean waters of his tropical home.

To communicate with him, AJ’s caregivers all learned sign language, including his parents, grandparents and pediatric home care nurses from Castle Medical Center (CMC), the Adventist Health hospital on Oahu.

“The look on his face when we responded to his first signs was priceless,” said Malia Cross, LPN, pediatric respite nurse. “He was so happy that we finally understood him.”

“AJ taught me all of my colors and zoo animals in sign,” said Gina Sakai, RN, pediatric respite nurse. Sakai has worked with AJ for the last year, teaching him to breathe normally and speak.

Happily, AJ’s trach was removed in August and he took his first trip to Hawaiian Adventures Water Park to go swimming in September.

“Before, AJ couldn’t even take a bath in more than a couple inches of water,” said Sakai. “He was so excited to go swimming!”

Specialized Care

While all Adventist Health hospitals provide access to home care services, CMC is distinct in that it offers specialized home care for mothers and children. Sign language is just one of the unique aspects. Besides routine home care, CMC’s Maternal and Pediatric Home Care Services include everything from instruction for newborn care, safety and feeding, and respite care for chronically ill or technologically dependent children. A pediatric nurse is on call 24 hours a day, 365 days a year.

“Pediatric home care is a different type of nursing,” said Sakai. “You have to know 101 different ways to use a paperclip—meaning, you don’t have the supplies like a hospital. You’re the respiratory therapist, the occupational therapist, the physical therapist. You’re it.”

A Little History

The first home care agencies opened their doors in the 1880s. Since then, the number of agencies in the United States has grown to more than 20,000. Currently, Adventist Health operates 16 of those agencies throughout the West Coast. Everything from light housekeeping to post-partum checkups to around-the-clock care is available.

“Adventist Health views home health services as an important part of patient treatment,” said Sherry Mendoza, RN, director of Home Care for Adventist Health. That importance translated into nearly 300,000 visits in 2005.

“As hospital stays get shorter and shorter, home health care becomes more important,” said Mendoza. “Because they leave sooner, our patients are sicker.”

Patients also can be very scared. “If they go home different than when they went to the hospital, it’s unnerving,” said Mendoza. “Sometimes they can’t walk because of a surgery or their wounds need dressing. It’s also hard to have a stranger in their home.”

Indeed, working in a patient’s home is one of the more challenging aspects of being a home health care professional. In hospitals, specific rules and regulations are enforced. At home, patients make the rules. Nurses and other professionals contend with different elements in a home setting including varying standards of hygiene, late night care and even vicious pets.

Hospice

Closely related to home care is hospice or end-of-life care. Often set in a patient’s home, hospice is a concept of care dating back to medieval times. It symbolizes a place where travelers, pilgrims and the sick, wounded or dying would find rest and comfort. Modern hospice offers extensive care for patients and families facing terminal illness.

Emphasizing comforting rather than curative care, hospice workers perform a special function by working in the home of a terminally ill patient. This allows patients to spend their last days out of a hospital and in the most comfort.

“Hospice workers often care for the family of patients more than the patients themselves,” said Mendoza. “That support doesn’t stop when a patient passes away. Hospice workers may continue to care for families up to 24 months after they lose their loved one.”

Home Away From Home

Unfortunately, not all hospice patients can be cared for in their homes. Some live alone and cannot take care of themselves. Others live with family unequipped to care for them. At Feather River Hospital (FRH) in Paradise, Calif., patients have another option for hospice care besides nursing homes or hospitals. That option is Paradise Hospice.

Paradise Hospice operates like an actual home, not a hospital. The décor is inviting with comfortable furnishings, adjoining patios and living rooms. Patients wear their own clothes, not hospital gowns. And families visit whenever they want—there are no restrictive visiting hours. The hospice house even employs a full-time cook to make patients custom meals.

For Paradise resident Doug Poppelreite, Paradise Hospice was an answer to his prayers. After a two-year battle with lung cancer, his close friend, Noreen Froke, passed away in January 2004. She spent her remaining weeks at home under the watchful care of Poppelreite and the hospice staff and spent her last few days at Paradise Hospice.

“Noreen’s life was difficult near the end—though it could have been a lot worse without help from the staff at FRH,” said Poppelreite. “They were able to help support Noreen physically and emotionally. Paradise Hospice helped lift the burden of Noreen’s illness. The staff was very accommodating.”

Celebration

Each November, the National Association for Home Care and Hospice (NAHC) celebrates these organizations with National Home Care and Hospice Month. The month honors health care workers who make a remarkable difference in the lives of some eight million patients and their families worldwide.

“This annual celebration is particularly meaningful to our system,” said Mendoza. “Our dedicated clinicians fulfill a very special part of our mission by delivering much-needed care to patients, right in their homes.”

For more information about Adventist Health Home Care Services, visit www.adventisthealth.org and click the “Health Care Services” tab.